full potential - downs syndrome scotland

Full potentialSpring 2015 Volume 6 Issue 1 www.dsscotland.org.uk

Full potential CONTENTS

Welcome - A little more...

Headlines - Amazing photography and the possibility of a Disney princess with Down’s syndrome.

Research - The latest from the University of Cambridge on their studies on dementia.

Family - A father tells Full Potential about his son with a love of Irish folk music and Guinness.

Branches - From Down Right Fun in Angus to a new Highlands and Islands branch, there’s a lot happening!

Lifestyle - It’s onwards and upwards for “Mr Sleek”.

Family - 14 year old Jacob tells us about his younger sister Bella.

Education - We have some great advice on apps that can really help with developing communication.

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8 - 9

6 - 7

11

10

12 - 13

Feedback - Some great feedback from our members.

Health - Some useful information about potential lower limb problems.

14

15

5

2

p6 p8 p10

Health - Difficulties with breastfeeding.

16 - 17

Fitness - Dancing in Deeside is great for fun and fitness!

18 - 19

Tribute - Alistair Gordon Watt. 20Opinion - Editor, Callum, gives his take on employent opportunities for people with Down’s syndrome.

21

Fundraising - Find out about our amazing Mongolia trek!

22

Awareness Month - Find out what we have planned.

23

Get Involved - There’s no shortage of fundraising opportunities!

24 - 25

Gallery - Some of our favourite pictures from the last few months.

26

Information - All the contact details you might need.

27

p18

p20 p21

p11

p16

Don’t miss our FUNDRAISING FOCUS pullout in the middle of this magazine!

In this issue...

Spring 2015 Volume 6 Issue 1 www.dsscotland.org.uk

Full potentialWELCOME


Welcome to the Spring 2015 edition of Full Potential and my first as editor. It’s a real pleasure and challenge to take over this great publication.

By the time we go to print, I will only have been with Down’s Syndrome Scotland for a few months. In that short time, I have learnt so much about those with Ds, their families and those with a general interest in Ds and the work we do. Now that I’m part of this amazing community, while I’m learning all the time, it makes me realise how much work there is to do.

As this magazine lands on doormats across the country, Down’s Syndrome Awareness Week is just around the corner. This year our message is “a little more”. That extra chromosome gives someone a little more and we want the people of Scotland and beyond to learn a little more about Down’s syndrome. If they learn a little more, perhaps they will feel moved to give a little more. We know you already understand the work Down’s Syndrome Scotland does and its importance. During this year’s Awareness Month, join us in spreading that message.

“That extra chromosome gives someone a little more and we want the people of Scotland and beyond to learn a little more about Down’s syndrome.”So, if you want to get involved, why not take part in one of our activities that puts the fun into fundraising? Lots of Socks is back for another year so dig out your most outrageous, mismatched and colourful socks! When people ask you why, you can tell them all about Down’s syndrome! We’ll also be running Do a Dish again which is a great, inclusive way to have fun and learn in the kitchen. And, of course, everyone loves a bake sale! If you fancy something a bit more energetic,

why not sign up for Race 21, a fun way to raise some money with friends and family?

I hope you all like my first edition of Full Potential! I’d love to hear all of your feedback so please email me at the above address. Our Facebook page is always livened up by your family photos and stories so please keep sharing! That goes for all of our fundraisers as well. The work you do is so important and always inspires others to give it a go as well. You can also tweet us @dsscotland using #fullpotential.

As ever, we are always available to help via Facebook (www.facebook.com/dsscotland), by email ([email protected]) and by post at: Down’s Syndrome Scotland, 158/160 Balgreen Road, Edinburgh, EH11 3AU.

Thank you again to all of the contributors for this edition of Full Potential. You bring the magazine to life and make it the success it is.

Callum MackinnonEditor of Full Potential

3

Callum Mackinnon Editor Full Potential

[email protected] @dsscotland #fullpotential

A LITTLE MORE...

Full potential HEADLINES


A couple from the San Francisco Bay Area have started an online petition in a push for Disney to create a princess with Down’s syndrome. Keston Ott-Dahl and her wife, Andrea, set up the petition on 1st October 2014 at the start of the US Down’s Syndrome Awareness Month (I don’t know why it’s different - Editor). They have an 18 month old daughter, Delaney, with Down’s syndrome. The petition reads: “Disney does a great job of depicting right from wrong. It has long provided wonderful moral lessons that teach our children to be good people, but sadly, the company comes up short in one critical area. What wonderful lessons of diversity, compassion, and acceptance Disney could teach our kids if they promoted disabled characters and heroes and heroines in their beloved movies!” At the time of writing, signatures were at 84,000 but the number has been rising steadily. Initially there was no comment from Disney but, on 11th November 2014, the studio responded that they were “committed to continuing to create characters that are accessible and relatable to all children”. What do you think? Tweet us, message us on Facebook or email [email protected] with your thoughts. Or do you know of a Disney princess like Chloe (above) waiting in the wings? We’d love to see pictures!

Visit www.thepetitionsite.com to sign and give your support!

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WORLD (U.S.A)UNITED KINGDOM

Oliver Hellowell is a young man from Westonzoyland in Somerset with an exceptional talent. Oliver is 18 years old, is an exhibiting photographer, well on his way to becoming a professional, and he just happens to have Down’s syndrome.

His photographs focus on nature and wildlife, capturing the details most of us walk by without seeing.

His mother, Wendy O’Carroll says: “Oliver, I think, sees the world a little differently, he sees a lot of the detail. So the detail that you and I walk past and don’t take any notice of, Oliver will stop and take a picture of even if it is just a bit of sunshine on a leaf or some sticks that are lying there or a brightly coloured leaf in amongst some dark surrounding area. He’ll notice all those tiny little things and want to capture them”

Stepfather, Mike O’Carroll, introduced Oliver to photography, showing him the basics but Oliver is very much his own man. He has his own style and any interference from Mike is met with short shrift!

We are delighted to be bringing a selection of Oliver’s photographs to Eden Court in Inverness during Awareness Month in March so make sure you take the opportunity to see them up close! See page 23 for more details.

Do we have any budding photographers in our membership? Let us know if you are and share some of your photos and stories with us!

Photo: Mike O’Carroll

Full potentialRESEARCH

Alzheimer’s disease is a term we are all becoming familiar with, which is no surprise considering we now see it in the media on an almost weekly basis. Yet how many of us understand what Alzheimer’s disease actually is, and what it means for people with Down’s syndrome? At the Cambridge Intellectual and Developmental Disabilities Research Group (CIDDRG), we have been researching Alzheimer’s disease in peoplewith Down’s syndrome for almost 20 years. Recently this research has taken a high-tech turn, using brain imaging techniques to investigate the most basic, biological aspects of Alzheimer’s disease that have puzzled and frustrated scientists for over 100 years.

In 1907, Dr. Alois Alzheimer first described the microscopic changes in the brain that define Alzheimer’s disease – amyloid plaques and tau tangles. These are believed to result in the increasing loss of the brain’s neurons and lead to symptoms such as memory loss. Yet exactly why and how this happens is not well understood, although we do have some vital clues. For example, we know that amyloid plaques are made from a protein called the Amyloid Precursor Protein (APP for short), which is made by a gene located on Chromosome 21. Therefore, people with Down’s syndrome have three copies of this gene and makemore APP than other people. It seems that this is the most likely explanation for why many people with Down’s syndrome develop Alzheimer’s disease early on in life. Amyloid plaques are the first sign of Alzheimer’s disease to appear in the brain, starting many years before symptoms of the disease become apparent. Because of their link with Down’s syndrome, we have put these plaques at the centre of our research questions and hypotheses. We want to know exactly when these plaques begin to build up in the brain, and how they relate to symptoms and loss of the brain’s grey matter. We are investigating this by taking MRI scans of the brain, which show the brain’s grey and white matter in great detail. Then we can find out the amount and locations of 5

DEFEATING DEMENTIA IN DOWN’S SYNDROME AT THE UNIVERSITY OF CAMBRIDGE

amyloid plaques in the brain using a PET scan, which uses small amounts of radiation that briefly stick to the plaques before being washed away naturally.

During the first phase of the project we scanned the brains of a number people with Down’s syndrome over the age of 30. This part of the study will tell us at what age people with Down’s syndrome develop amyloid plaques and will allow us to see how the brain changes as this happens. During the next phase of the study, we will invite approximately one third of our participants back to Cambridge to have the scans again. This will provide vital information about how quickly amyloid plaques accumulate, and whether the amount of amyloid is related to the loss of grey matter, and symptoms like memory loss.

This is the main study in a programme of research at CIDDRG, which includes other studies using techniques that we hope will detect Alzheimer’s disease at its very early stages. Our hope is that together, these studies will help to find the optimal window of intervention for anti-amyloid therapies. To date, all such therapies have failed, likely because they were started much too late. But if started at the right time, these treatments have the potential to prevent Alzheimer’s disease, and will therefore be crucial in our mission to defeat dementia in Down’s syndrome. For more information on this, or another of our studies, please email [email protected] or [email protected]. Alternatively, please call 01223 746 127 and speak to me or my colleagues.

by Liam Wilson, PhD student/Research Assistant

Liam and the team at University of Cambridge

Full potential FAMILY


This is a bit of an insight into our lives since Ewan was born - lessons learnt and some of the fun we’ve had along the way. I present this in the spirit of shared learning for the newer mums and dads and not as a recipe or road map, nor a criticism of the various specialists involved.

We have 2 boys Graham and Ewan. Well, they are grown men now. Graham is the eldest aged 31 and Ewan, who has Down’s syndrome, is 28. Like most parents, when there are no surprises with your first child, you tend to take a lot for granted. For example, they will go to a local school, college, get a job and they will have a happy and fulfilled life and everybody lives happily ever after. Well that’s the image portrayed at any rate.

Then along came Ewan, and for us, an overwhelming feeling of helplessness. We got some help from the range of specialists, but early on, it was often confusing and not particularly helpful. We were looking for definitive answers on what life had in store for Ewan. Of course this was completely unrealistic. Nobody could predict that for either of our children!! As you would expect we found out all the stuff about Ds and looked to the “experts” for help. Early on we had meetings with a paediatrician and whilst he helped with some things, there was a lot of “he probably won’t be able to do........” or “he might not be able to......” in one meeting early on I shared a thought “other than his health you don’t really know what life has in store for Ewan do you?” and to his credit he agreed. So during this meeting we agreed that he would advise us on Ewan’s

health and we would take care of the rest and keep him updated on progress. During thistime another penny dropped - we shouldn’t take anything for granted as far as our son Graham was concerned either.

During Ewan’s 28 years, there has been a lot of charting of unknown territory. For example, having to fight for a place at mainstream primary school, then secondary school, then college and finally a job.

There were some difficult times, especially when we were dealing with some of the support agencies. Whilst most of the people meant well and had Ewan’s best interests at heart, it didn’t always seem like that. As parents, we had to show we could add value to the development process.

During these times, it was occasionally difficult to remember to take the time to enjoy the moment and be proud of our progress, no matter how small.

Anyway, the boys grew up fast and our eldest Graham went through college and university studying sports coaching. On reflection this was hardly surprising, when we looked back Graham was helping to coach Ewan all his life. When the boys were growing up we tried to make sure that we had as full a family life as possible and we had plenty of adventures and experiences.

Our boys...by Andy Torrance, dad

“...Ewan was handed a bodhran and...to our amazment, we discovered he could actually play it...”

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Full potentialFAMILY


One experience along the way seemed to trigger a significant part of Ewan’s development, one that we would never have dreamt about in a million years. We joined a theatre group that were putting on a scene that was based in an Irish pub.

There was a folk band playing in the scene and Ewan was handed a bodhran and got to sit with the band. To our amazement we discovered he could actually play it and now loves folk music, especially Irish folk music. There is hardly a day goes by where he isn’t practising!!

As part of the next set of adventures, our eldest son, Graham, moved to Ireland. Ewan enjoys going over for a holiday to be with his big brother. This year, Graham got him a gig with 2 guitarists in the famous Temple Bar and Ewan took it all in his stride and performed well.

Ewan has a busy life including 2 work experience placements. Ok they are unpaid but he gets out 2 days a week for a couple of hours each day and he feels important, with a sense of purpose.

So here we have a 28 year old who supports Kilmarnock FC, rides tandem, likes the odd pint of Guinness, has 2 part time jobs and has played twice with a band in a busy bar in Dublin.

If somebody told me when he was born that he would go on to achieve this, I would gladly have taken that.

So the moral of this tale is to be confident in your ability, give your children a variety of experiences and recognise that you have value to add in your child’s development.

Whilst all the “erapists” and “ologists” can give opinions about your child’s development, the truth is nobody really knows how life will turn out.

There will always be highs and lows bringing up children, but it is important to recognise and celebrate the progress you have made on your journey and remember to enjoy the moment!

“...the truth is nobody really knows how life will turn out...”

“...we have a 28 year old who likes the odd pint of Guinness...”

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If you have a story about a family member you would like to share, please get in touch at [email protected] or contact us via Facebook at www.facebook.com/dsscotland

Full potential BRANCHES

Spring 2015 Volume 6 Issue 1 www.dsscotland.org.uk8

NEWS FROM OUR BRANCHES

Down’s Syndrome Scotland is opening a local Highlands & Islands branch thanks to willing families who have come forward to volunteer as committee members.

The branch is hoping to offer a variety of activities to suit all ages and would be delighted to hear any ideas from our local members. We will be holding the group in Hilton Community Centre, Oldtown Road, Inverness which offers rooms suitable for different ages and activities.

These will be held on the first Saturday of the month and would also require the attendance of a parent or carer.

The launch day is on 20th June 2015 and we would love for you to get involved and join in the group.

If you are interested in attending please contact Shona Robertson the Family Support Service Officer for the North West on [email protected] or 0791 856 8975.

Down Right Funby Jacqueline Watson,

mum

Highlands & Islands branch to open

this June!

We are two mums (Jacqueline and Julie) of children with Down’s syndrome (Logan and Finn) and we have set up a local club in Montrose called Down Right Fun, as part of the Grampian Branch. We currently meet once a month and arrange fun activities for each session, we have had a lot of great sessions so far including animal handling, yoga, arts and crafts, soft play, build a bear, drumming, drama and lots more. We currently have around 13 families who regularly attend our monthly sessions.

We have been very successful in fundraising and were delighted to have been awarded £2000 through The Bank of Scotland Community Awards, alongside receiving money from our local branch. In addition, many of the parents, family members and friends of those who attend the club have all helped with fundraising (too many to mention!) which enables our club to plan for the next year. We are very grateful for all money raised and have another fun filled year ahead planned for 2015:

Sunday 5th AprilSunday 3rd May Sunday 7th JuneSunday 28th JuneSunday 6th SeptemberSunday 4th OctoberSunday 1st November Sunday 6th December

Please note, dates are subject to change.

Full potentialBRANCHES

Spring 2015 Volume 6 Issue 1 www.dsscotland.org.uk 9

As a branch, when you are planning your fundraising, contact Pippa to ensure that you have all the relevant information and are meeting the legal requirements ([email protected])

Our branches are always busy with fun and useful activities for children and adults with Down’s syndrome their families and their carers.

Beat It Out is back in Newport-On-Tay (Rio Community Centre, St Mary’s Lane, DD6 8AH). This is a great opportunity to make some noise and is suitable for members aged 12 and over.

ShowDowns! Drama Group in the west is also still going. Now at a new venue in Shawlands (Hutcheson’s Grammar School, 21 Beaton Road, G41 4NW), these groups are fantastic for developing confidence and communication skills as well as having fun.

Of course, there’s a lot more happening across the country with all the different branches so please keep an eye on our website for updates.

As well as fun groups for all ages, there are often opportunities to get involved with branches at a community level, helping to run groups and having a say as to what goes on.

Again, make sure to check the website for updates and, if you haven’t already, make sure you “like” us on Facebook and “follow” us on Twitter.

facebook.com/dsscotland

twitter.com/dsscotland

...and that’s not all!

As ever, if you have photos, stories or ideas to share from your branch activities, please let us know and we can look to include it in a future edition of Full Potential, on our website or on social media pages. Email [email protected].

Ayrshire is GO!

The Ayrshire Parent and Toddler Group is now up and running in Kilmarnock!

This will run once a month at the North West Centre, Western Road, Kilmarnock, Ayrshire, KA3 1NQ. Groups are free to all parents, carers and families of pre-school children and babies with Down’s syndrome and there is ample parking at the centre. Confirmed dates for 2015 are:

Sunday 22nd MarchSunday 19th AprilSunday 24th MaySunday 21st JuneSunday 19th JulySunday 23rd AugustSunday 20th SeptemberSunday 18th OctoberSunday 22nd NovemberSunday 20th December We hope to see you there!

Please note, dates are subject to change.

Full potential LIFESTYLE


Until a few months ago, 46 year old Graeme Millar lived with his mother in Dundee. Graeme was happy and settled, used to his daily routine. However, the family felt that it was time to look at making new arrangements for Graeme and his mum. The house they lived in had a lot of stairs and was too large for just the two of them. So Graeme made the big decision to move to a town in Angus and live with his sister Joyce. This meant many changes for both Graeme and his sister but they found a new flat and Graeme began looking for things to do that would be closer to home.

Graeme said “Arbroath is great, I like living here but I’m tired a lot” and no wonder! Since moving, Graeme has started college, joined a local slimming group, continued to regularly attend exercise classes and is due to start a work placement in January.

Graeme attends an arts and crafts class and enjoys being able to walk to college. He attends a cycling fitness class twice a week where he rides a blue bike and enjoys a virtual tour of a woodland landscape whilst pedalling. Graeme is also a keen swimmer and previously won Bronze, Silver and Gold medals at the Special Olympics in Sheffield and Portsmouth. He has medals for his achievements in skiing and snooker too.

Graeme has always been very outgoing and has travelled the world with his family. His favourite country is Egypt. Graeme has been to Egypt a few times and always brings back more souvenirs for his collection. His Native American collection is displayed in his living room but there wasn’t enough room for his Star Trek collection when he moved out!

“HELLO MR SLEEK”

Graeme doesn’t have a spare minute with all his hobbies, fitness and collections!

by Vikki Stillwell, Family Support Service Officer (North East of Scotland)

Shortly after moving, Graeme decided that he wanted to lose weight and so joined a local slimming group where he has lost over a stone and recently won the ‘Mr Sleek’ award. Graeme said that he enjoys the groups because the recipes are delicious and he enjoys the taster evenings, “I enjoy losing weight. I am slimmer and fitter.” Graeme is hoping to learn more cooking and waiting skills when he begins his work placement at a local cafe in January.

Full potentialFAMILY


Every family is different, and all families have special relationships. Some relationships and families are different and have to deal with different things. My little sister Bella is very different from other boys and girls her age. She has Down’s syndrome. Bella really does stand out from the crowd, less physically but more mentally. Her bright pink glasses, her short shaggy blonde hair and her lovely baby-soft skin really make her special in the group but also very special to me. She doesn’t really have any one particular star skill except from being beautifully flexible which makes her good at gymnastics, along with her willingness to try everything at least once. A characteristic of having Down’s syndrome is that she has low muscle tone therefore she runs out of energy very fast. Her main hobbies are roller-blading, cycling, dancing and gymnastics. Obviously everyone lives a different life but my life is different in that me and my family have to compromise what we do to involve Bella and so that we can help her see friends and go to her clubs. I see her disability as a bit of a chore because she always seems to want to play with me. I suppose my family are Bella’s best friends so that is why we must always find something for her to do before we can organise our days.

Although there are difficulties, there are also some positives. I feel I am a lot closer to my family than I would have been if we did not have to deal with my sister’s disability. When I am not around my sister, I can really relax and put my feet up. Even though she has Down’s syndrome, she is still my little sibling, so I will always take the larger ice cream or lick more of the bowl after baking. My sister will always be disabled, I just get used to it. Even though there are a lot of negatives, my little sister would just not be my little sister if she didn’t have Down’s syndrome!

MY SISTER by Jacob Van Velsen, sibling (age 14)

Full potential EDUCATION


Speech and Language Therapists (SLTs) are often asked about how to use iPads, Android devices or similar with children with language and communication difficulties. Such devices are motivating for both the child and their “communication partners” (parents, friends and siblings), who are often keen to help with therapy practise or model the use of a communication app. Many children now have been exposed to this technology from a young age and navigation comes easily. There are, of course, limitations in relation to accessing devices and an individual’s fine motor skills, visual skills and cognitive skills need to be considered when embarking on their use.

At an early, stage sensory apps can be used to encourage visual skills such as visual scanning and tracking and to develop cause and effect. There are baby touch apps available such as those by Fisher Price, a range of sensory and early vocabulary apps.

Photos and videos on the electronic devices can encourage joint attention and conversation. Take photos of family members, favourite places and activities and look through them with your child, talk through the vocabulary and model the signs. Photos and videos are a great way to share news with friends in school or family members. There are photo story apps available such as Pictello, Book Creator or Special Stories.

There are many fun apps available which focus on speech sound production or language development. These apps do not replace SLT assessment and advice but can enhance therapy, providing a fun way to consolidate or practise new skills. Your SLT will be able to guide you in which concepts or sounds are appropriate to work on with your child and model how to give your child appropriate feedback during activities

Symbol or text based augmentative and alternative communication (AAC) apps have been developed too. These use symbols, photographs, text and/or voice output.

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These apps may support some people with communication difficulties to make choices and share information with others. AAC apps range in price from 69p to over £100. Some of the popular apps include Proloquo2go, Sonoflex or Go Talk Now although there are numerous apps available. It is important to seek an assessment from a Speech and Language Therapist when considering using a device for AAC as there are multiple factors affecting the sustainability of hardware and software for AAC use.

When using electronic devices to support speech and language difficulties, the communication partner should always sit with the child to encourage joint attention, interaction as well as to support the child’s understanding and use of learning within the app. They should comment on the game or activity, add language to build the child’s understanding of what they are doing and encourage repetition of words and sign. There can be a danger of technology becoming the focus of therapy rather than the interaction, language or speech sounds.

While the iPad and Android devices can be of great benefit to many children, it is not the answer for everyone. There remains a need for an assessment and advice from a trained Speech and Language Therapist. These are great tools but there are many alternatives we can use for developing communication and should be used with care and guidance. Online resources to guide us include Call Centre, iCan, Communication Trust or speak to your local speech and language therapy service.

HOW APPS CAN HELP WITH SPEECH AND LANGUAGE THERAPY

by Jamie Crooks

Speech & Language Therapist (Complex

Additional Need Service)

Full potentialEDUCATION


Text-basedAAC

Hybrid App

Structures

Sono Flex(SymbolStix)

TalkingTiles(SymbolStix)

Answers:Yes/No

ClaroComPro

GoTalkNow(Widgit)

(SymbolStix)

SceneSpeak

Scene & Heard

(Widgit)

SPEAKall!

Tap Speak Button

SentenceCreator

WidgitGo(Widgit)

Story Creator Dynavox Compass

(PCS)

SoundingBoard

Book Creator

FTVS HD

Image2Talk

Proloquo2Go(SymbolStix)

Symbols2Write:

Adjectives

See Touch Learn

Choiceworks

Speakit!

TouchChat HD(SymbolStix)

Picture Me Calm

Verbally

MyChoicePad(Makaton)

iPad Apps for Complex Communication Support Needs: Augmentative and Alternative Communication (AAC)

Bitsboard

Proloquo4Text

AACEvaluation

Genie

Assistive Express

Predictable

ChatAble(Widgit)

AACorn

Talking Cards

Talking Mats

MobileSign2(BSL)

Symbols2Write:

Sentences

*Dotted lines indicate that there can be overlap of App features across category boundaries.

An electronic version of this chart can be downloaded from http://bit.ly/CALL-AAC-App-WheelApp names are ‘clickable’ links, taking you to information about the individual App on the iTunes site for the UK.

Unity Core

Symbols2Write: Verbs

Our Story

Symbol-

based Grid

Systems

FullCommunication

Systems

Text-To-Speech

LessComm

on

Symbols

or own

photos

StarterVocabularySetsProvided

Commonly

UsedSymbol

Sets

BasicSystems

Spec

ific

Appr

oach

es

Comm

uni-

cation

Narratives

Skill

Building

SimpleCommunication

Recorded Speech

Visu

alSc

ene

Dis

play

No M

essa

geBa

r

PECS

Talking Mats

VisualSchedules

Photo-

Stories

BSL

Language

Assessment

Look2Learn iAskUGrace

Autismate(SymbolStix)

Grid Player(Widgit)

(SymbolStix)U

nusual

Features

Switch AccessSwitch access may be necessary for some users, usually requiring a bluetooth switch interface and switch(es) tailored to the individual user. Previously, very few Apps were designed specifically for switch access. Although things have moved on since then, these Apps tend to be the ones that offer the widest range of useful scan options and functions, and may still be the ‘safest’ choice for switch users. These are marked in this wheel with small red ‘s’ (beside App icon).With iOS 7, however, new Accessibility settings built-in to the iPad itself mean that almost any/all Apps (and the iPad itself, desktop, and all functions) can be operated by one or two external switches (or by using the screen as a switch, or even head movements). Many AAC Apps that were not specifically designed for switch access will run satisfactorily under ‘switch control’ in iOS7 accessibility settings. But be careful! A few do not work at all – or not well – with iOS switch control. So if you know you are going to need switch access, never buy an App that claims to be switch accessible without checking which switch interface is needed, what settings are available and - if possible – perhaps via a specialist centre such as CALL Scotland – whether it actually works or not!

Yes-No Your Way

PicsAloud

Inner Voice

TalkTabletUK(SymbolStix)

Alexicom AAC

Abilipad

Phra

se

stor

age

Pred

ictio

n

Keyb

oard

Quick

Chat

SomethingTo Say

Typ-O

Talk Assist

Rocket Keys

Speak for Yourself(Smarty)

MessageBar

So Much 2 Say

Expressive(Smarty)

PictureCanTalk

Identifying Suitable AppsThis wheel does not include every App available in each category. There are hundreds of AAC Apps and many hundreds of combinations of features. This wheel includes Apps that CALL broadly finds reliable and useful and/or that stand out in their category. For a useful, comprehensive and regularly updated listing of AAC Apps, see www.janefarrall.com

And also... AAC Ferret This is a very valuable App developed by Spectronics that allows you to search for AAC App by keyword and/or by specific feature(s) e.g. App types; type of voice output; visual representation; vocabulary features; vocabulary display; access; customisation; message sharing; support features. AAC Ferret

Learning Story Creator

Pictello

Own

Imag

es

CommunicationSkills

*

*

Click n’ Talk

Able AAC

TapSpeak Sequence

Use2Talk

s

s

s

s

s

ss

s

s

s

s

s

My Story

Version 1.1, June 2014 CALL Scotland, The University of Edinburgh. CALL Scotland is part funded by Scottish Government.

SimpleAAC(Unlimiter)

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Full potential FEEDBACK


“Thank you for everything

this year. It is so reassuring

to know that you are there

when we need you!”

“Thanks sooo much for your time and help, you’re a star!”

“Thanks for all your help and for listening! :)”“Just had a great meeting with

Jo from Ds Scotland Charity who

is helping us navigate the hell

that is finding the right school

#Thanks #Respect”

“I appreciate everything you have done, letting me know

about all the things I can do which will help my little girl in the

future! Getting me in contact with other mothers that have or

are going through the same thing as me has made me feel not

alone and that will benefit my daughter and me in the future

as well. Thanks again x”

Dear Down’s Syndrome Scotland...

If you would like to leave us your comments, good or bad, or even write a short article for a future issue of Full Potential, please get in touch on [email protected]. You can always send us a message or comment directly onto our Facebook or Twitter feeds as well. If you haven’t already, make sure you “like” us on Facebook and “follow” us on Twitter. It’s the fastest way to hear all the latest from Down’s Syndrome Scotland!

Keep in touch!

facebook.com/dsscotland twitter.com/dsscotland #fullpotential

Our members talk to us through a wide range of methods - text, email, phone, Facebook and Twitter. Here are just some of the comments we’ve had in the past few months...

FUNDRaISING

FOCUs Spring 2015 Issue 6 www.dsscotland.org.uk

#fullpotential

Well, where do I begin? Since the last edition of Fundraising Focus we have had some really great success stories around fundraising and some fabulous fundraisers to thank.

The more eagle-eyed of you will have spotted that the “new Community Fundraiser” which Sharon Kane (our former Fundraising Manager) mentioned in her last editorial in the Autumn 2014 Fundraising Focus, was me: Pippa! Since then I’ve been promoted to Fundraising Manager but my goodness, Sharon is a difficult act to follow. However, I do believe that she left a little of her energy behind for me to make use of, so it would be wrong of me to do anything but try. We miss her and wish her all the best of luck in her new role as CEO in another charity: Funding Neuro.

The talents of our fundraisers and volunteers are many and varied and much appreciated by me and all of us at Down’s Syndrome Scotland. There are individual fundraisers to thank who have hosted small events which have turned into large events, and large events that have exceeded our wildest expectations and targets. To the entire cast of event organisers, runners, walkers, climbers, parachutists and cyclists who have brought in money by getting themselves sponsored in our name, a very big thank you!

Our major Down’s Syndrome Scotland event since you last heard from us was the Forever 21 Gala Ball held in the Grand Central Hotel in Glasgow last November. Look opposite for more information and some great photos.

We had an amazing time at the panto in Glasgow this year aswell where our celebrity patron, John Barrowman supported us in collecting again but more on that later…

Last year, the Charities Aid Foundation was commissioned by the British government to examine how much spend from individual households goes to charities. Households across the country spend as much a week on cheese asthey do on charity! I don’t know if that surprises you as much as it did me, but remember that all of you can make a difference to the amount of support we can give to families affected by Down’s syndrome when they need and ask us.

We are galloping towards another Down’s Syndrome Awareness Month/Week/Day and I look forward to lots of photos and stories of the mad and fun things that our fundraisers are going to want to get up to. I hope that you will want to do your bit for us too. Let’s keep the Fun in Fundraising.

A WHIRLWIND END TO THE YEAR!

PippaPippa MorriceFundraising [email protected]

Last November, Down’s Syndrome Scotland went back to the very sumptuous surroundings of the Grand Central Hotel, Glasgow (where we celebrated our 30th anniversary two years ago). We held a marvellous black-tie gala ball and were ably hosted by Wendy Johnston and the hotel staff.

Suzie Cunningham, the Chair of the Ball Organising Committee, challenged the 315 guests comprising friends and families known to Down’s Syndrome Scotland and Scottish businesses to help contribute to a program of 21 key fundraising events between then and the World Congress in 2018.

With iPads on each table, guests were able to interact with the silent auction throughout the evening, raising a terrific £8921!

After dinner, our Master of Ceremonies, Boardley, whipped the room into a frenzy for the live auction. We had a marvellous team of volunteers who assisted with the management of the Gift Aid process and the table raffles (Catriona Cassells, Ashley Cheyney, Nicola Cheyney, Joanna Coulter, Nadia Crossan, Ed Cubitt, Jo Hughes, Tarran Low, Keeva Low, Callum MacKinnon, Leanne Morton, Wendy Moultrie and Katrina Tilston - thank you all very much!)

The evening grossed £52,000 making a very high target to match for the next one! Many thanks to everyone who donated prizes and time to make this event such a huge success.

Paul Corbally was the absolute star of the show, giving a very humorous speech about his achievements and family. He did a marvellous job and I would like to thank him for being so generous of his time in preparation of his speech (with our Family Support Officer, Jo Hughes, who coached him).

In the car on their way home, Paul’s parents (Jim and Clare) asked him what his favourite part of the evening was to which he replied in amazement “My speech of course”!

Foolish question mum and dad!

FOREVER 21 GALA BALL Photos: Paul Cowan

Last September I got a call from Katrina Leese, one of our parent volunteers in Tayside. She is the mother of Adam (9) and Matthew (5). Matthew has Ds and Katrina is an active member of Down’s Syndrome Scotland who also chairs the Tayside Branch. With her husband Colin and friend, Sarah Robertson who is mother to Finlay (with Ds) and Orlagh, she had been planning a second fund raising evening to be held at Perth Race Course and was almost completely ready. Sponsor identified, prizes sourced, band and photographer booked and menu chosen; she simply needed some Down’s Syndrome Scotland balloons to complete her vision.

Our patron, John Barrowman, holds us very close to his heart through personal connections with Ds. Through his desire to help us, and the generosity of Qdos Entertainment (the company behind the Glasgow panto last year), we were given permission to collect at 17 shows after Christmas and into the New Year period. This was particularly generous of Qdos as their director sits on the board of a national children’s charity and normally they would collect for that alone. I would like to extend grateful thanks to them on behalf of Down’s Syndrome Scotland.

Our excellent volunteers helped us raise £24,528, averaging £1443 per show! A huge thank you to everyone who helped:

THANKS JOHN!

McAlpine family, Clan Morrice (including my mother in law!), Karen Gilligan, Moultrie crew, Christine and Gregor Williamson, Ian Fraser, Morna and Bella Lawson, Audrey and Eve O’Neill, Emma and Codie Young, Ed Cubitt, O’Neil family, Steven Young, Theresa and Paul McDaid, Sharon and Duncan Kane, Chris Wilton, Rohma Akram, Sarah and Jack Van Putten, Sarah’s parents, Callum Mackinnon, Susan, Della and Blake McKenzie, Marisa Tighe, Miriam and James Hughes, Joanna and Andrew Coulter, Jason Bright, Helen, Matt and Daniel Hayes, Andrew and Fiona Macintyre (and anyone else I might have missed because of last minute rota changes!). Thank you for such willing help and support.

Karen Gilligan’s team with Wendy Moultrie and her family, Christine and Gregor Williamson, can claim the fundraising title, taking £1,826 over 20 minutes after an afternoon show! It’s not often said, but I was genuinely lost for words and touched by the generosity of the Glasgow audiences!

If you can think of a venue which would allow us to take collections from an audience as they exit a show or sports event, please contact me with the information. It has been a marvellous triumph for our Ds awareness campaign in addition to helping our fundraising target.

On October 3rd, the Down Right Fabulous Ball was launched, sponsored by Katrina’s employer Stagecoach Group plc. They had a marvellous 220 guests attending all in black tie and wonderful evening dresses. My volunteers helped to collect table cash donations in envelopes so we could reclaim the Gift Aid. They distributed the raffle prizes which Sarah and Katrina had sourced from many companies from in and around Perth and Tayside. There was also a marvellous auction with some great prizes which again had all been sourced from local sponsors and supporters. All of this food and fun was followed up by dancing to the fan-tastic live band “Fever”.

That night, £13,500 was raised by Katrina, Colin and Sarah. Here at National Office we were expecting around £10k so we were very pleased with this but nothing prepared us for what happened next... Senior management from Stagecoach Group plc were present at the ball and they didn’t just match, they exceeded the raised total. This brought the whole amount up to the amazing sum of £30K… WOW!

Thank you Katrina, Colin and Sarah, and thank you Stagecoach. I am so lucky to work beside such talented and enthusiastic people who want to give back so much to Down’s Syndrome Scotland!

KATRINA’S BALLPhoto: Ruth Trotter Photography

Full potentialHEALTH


Aldo Schiavone is a podiatrist based in Fife. Along with his colleagues Phil Simson and Cara Montgomery, he specialises in paediatrics and covers the whole of Fife. His profession offers help, advice and treatments to children and young people in relation to lower limb problems.

Aldo and his team recognised a gap which existed. They did not see many children with Down’s syndrome in their clinics, while the adult podiatry service did have clients with Down’s syndrome.

Their plan as a team was to establish a seamless service which would offer the best quality care to children and young adults, hopefully beginning before any problems manifest.

Many children and young people with Down’s syndrome have problems with the way that they walk, leading to orthopaedic problems. These problems are associated with low muscle tone and loose ligaments, both of which are characteristic features of those with Down’s syndrome. Some common lower limb problems are...

These lower limb problems can produce a number of painful symptoms. The feet can also be problematic with callous, fungal skin and nail infections and ingrowing toenails, all of which should be treated by a podiatrist. If you or someone you know is affected by any of these problems and you live in Fife, access to Aldo’s services is easy and you can self refer. Referral forms are available at all clinic and GP receptions and are also available online via the NHS Fife Website.

www.nhsfife.org

SMALLER LEGS,

FEET AND TOES LOW TONE TIP TOE WALKING

BUNIONS

LIMITED ANKLE MOVEMENT

LOOSE LIGAMENTS

OUTPOINTING

FEET AND TOES

TRIPPING

LOOKING AFTER THE LOWER LIMBSGood practice from Fife

Further Support

If you live outwith the Fife area and wish to see a Podiatrist, please ask your Family Support Officer who

can provide relevant information for your area.

Full potential HEALTH


Other than her being breech at 38 weeks, I had an uneventful pregnancy and delivery. Flora’s arrival on 14th January 2013 weighing 7lbs 5oz was the normal, joyous occasion that is the birth of a child. However, I began to feel nervous when, after several hours, we still could not wake her or interest her in breastfeeding.

We have an older son, so I was not perturbed by the various paediatrician checks or even the consultant who visited the next day to ask us questions about Flora and the development of ourwee boy. However, we soon learned that the consultant suspected Flora had Down’s syndrome. I clearly remember calmly asking him to repeat what he had said many times, as I struggled to understand. He pointed out several physical characteristics of Down’s syndrome which Flora had, but I could not see any of them. I don’t know if this was my mind denying reality or the new-mum hormones convincing me my baby was perfect.

The next few days spent in hospital were some of the most difficult days of my life. Looking back, it felt lonely, desperate and overwhelming. The support we received from staff was almost universally excellent, however no one could change the facts and we were going to have to get used to our new life as a famly with a child with Down’s syndrome.

After a series of tests, we learned a huge volume of new information about Down’s syndrome andFlora’s health concerns. This brought more anxiety and questions. I was in such a state of shock that the midwives arranged for me to meet with the psychiatrist in the hospital. I found it very useful to meet him and ask questions like “how likely am I to get post natal depression as a result of this?” and “why do I feel so bad?”.

One of the difficulties we faced was how to tell people that, although we were delighted to announce the birth of our beautiful baby daughter, she had Down’s syndrome. My husband and I had different approaches to this, I wanted to tell people immediately while he often preferred to wait. I found it helpful to ask a few close friends to share the news with groups of others so that I didn’t have to tell the story over and over again.

Quickly the issue of the Down’s syndrome paled into insignificance as we learned that Flora had two holes in her heart. The cardiology staff were excellent but the period waiting to hear what impact the holes were having on her and what treatment was necessary was excruciating. Particularly as, by this point, my husband’s

FLORA’S STORYby Aicha Reid, mum

Full potentialHEALTH


paternity leave had ended. He was back to work and I had to cope with a toddler, a new baby, what felt like endless appointments, alongside the devastation I felt at having to accept Down’s syndrome into my life.

One of the supports I found particularly helpful were visits from one of Down’s Syndrome Scotland’s Family Support Workers. Jo was very useful in helping me think through some of the difficulties we faced in respect of Flora’s Down’s syndrome. After a few days, our focus was shifted again as Flora began to struggle to breastfeed and lost weight. I cannot put into words how unbearable it was helping her learn how to breastfeed. We needed support from the Breastfeeding Clinics, the Infant Feeding Advisor and hours of searching the internet. We had to feed her every 3-4 hours with expressed breast milk using a Haberman Feeder. It was so difficult to wake her to feed and each feeding cycle took 1-2 hours. Finally, after 12 weeks and many near breaking points, Flora started to be able to breastfeed effectively. Soon she was breastfeeding as well as any other baby her age. I have never been so delighted with any achievement in my life.

As a result of my experiences breastfeeding Flora and the difficulties finding the right support and information, I have worked with the Infant Feeding Advisor at the Royal Infirmary to create a pack for new parents on Feeding Your Baby with Down’s syndrome. The pack contains information about the range of feeding difficulties babies with Down’s syndrome can have and ways to help them. I am also just about to finish training as a volunteer Breastfeeding Peer Supporter with the NHS. I hope to offer support and information so that all mothers can breastfeed their baby if that is what they had planned.

If you need support with your new baby, diagnosis or feeding, please contact the Family Support Service. If it relates to breastfeeding they can give you the feeding pack mentioned and can put you in touch with Aicha.

Flora and her brother are now aged nearly 2 and 4 years old. Flora is flourishing and each milestone in her development brings a special feeling of pride and joy. I still feel grief for the baby I expected to have who did not have Down’s syndrome and I can’t honestly say I’d have chosen things to be like this but I can honestly say that Flora is an absolutely fabulous person and it is a privilege to be her mother. I suspect I have a lot more to learn from her.

Best wishes to you and your family and I hope that, whatever has been thrown your way, that you find what you need to cope and to thrive.

Full potential FITNESS


The dance class that our children go to on Saturday at Deeside School of Dance, Banchory helps them in more ways than you would think.

As it’s a class for children with Additional Support Needs, they benefit from working at a slower pace and with greater repetition. This gives them more time to process information and act upon it. But it’s the little things that make the difference. The class begins with the register being taken (nothing different there I hear you say) but they all group together and Miss Donna takes it in turn for everybody to tick the box next to their own name and then it’s warm up time!

With the help of some girls from the dance school, Miss Donna tries her best to get everybody involved. It could be the Hokey Cokey or scarf waving (each of the children has their own favourites!). It’s a miracle if all the children are on their feet and paying attention at the same time but, you know, it doesn’t matter because they are there to enjoy themselves. Do they learn? Yes! Somewhere along the line they improve their coordination, confidence and general fitness. For some, it might be that their memory, timing and general body awareness increases. For Poppy, it’s great for her hypertonia. Ashley has learned to jump (both feet simultaneously, that is). And Daniel gets to

18

It’s the little things that make the difference... by Heather Wadih,

Grampian Branch Secretary

Full potentialFITNESS


indulge in what is becoming his great love - Scottish country dancing!

The main thing is that they enjoy going to class. They ask to go on a Saturday morning to see friends (that we hope will be for life).

At the end of each block, they perform a show for the parents to come and watch. We sit, chat and drink coffee. It’s so much fun! Some do as they’re supposed to, some sit and watch while others try to get the audience involved! These classes are subsidised by SCILL, a charity in Aberdeenshire. If you live locally and would like your child to be involved in a dance class in the area, this class is definitely worth a go.

19

“...they improve their coordination, confidence and general fitness...”

“...Miss Donna takes it in turn for everybody to tick the box next to their own name”

Full potential TRIBUTE


ALISTAIR GORDON WATT

by Sheila Watt, siblingAlistair, or “Ali” as he was affectionately known, was born on the 29th April 1963 to Derry and the late Anne Watt. He then became a big brother to Sheila and Ian who he cleverly called his best sister and his best brother! He was always very healthy until, unfortunately, in October 2010, he was diagnosed with dementia. He was admitted to hospital in early January 2014 and passed away very peacefully on the 26th February. He is sorely missed by so many family and friends but his life was truly an inspiration and is a story worth sharing. He had such a friendly and positive outlook on life with his favourite response being “why not?”. A lesson for us all!

Ali attended Cherrybank School in Perth until aged 16 then moved to the Kinnoull Adult Training Centre. He completed a 2 year horticultural course and gained various SCOTVEC certificates. After 5 years working in the Fresh Meat Company packaging department, he became a Nurseryman at the Westbank Nursery where he worked right up until his hospital admission. He was a valued member of the happy team there from 1997 and helped Perth to bloom with flowers, pots and hanging baskets. From 1994 he also thrived living in Arkbrae, being with friends and such expert carers, and his independence grew. He still kept his room on at the family home in Scone for weekend breaks and, of course, stocked with mars bars and coke! Because Ali was so fit, he was actively involved in various sports such as football and tug o’ war. He was a very competent freestyle swimmer, competing in events across the country in Tayside, Leicester and the Isle of Wight. The highlight was

winning a bronze medal in the 1990 European Special Olympics in Glasgow. He was also a competent skier in the Uphill Ski Club of GB and went numerous times to Austria, France and Italy. He competed at the Special Winter Olympics in Lecht in the late 90s where he was a torch bearer at the opening ceremony. He also climbed Ben Nevis twice. As you can imagine, his medals are everywhere!

Ali made friends with everyone and loved travelling, especially to the Lanzarote Princess Hotel, where he was a celebrity known for dancing in the piano bar every evening. He visited as far afield as Brunei, Oman, Denmark and Norway, as well as frequent trips in the UK with family and friends – including to St Kilda in 2012!

Ali loved films and music and enjoyed Mamma Mia and James Bond CDs even in his final days. He was always on the dance floor at every opportunity and was a valued member of the Stepping Stone Theatre Company in Perth for many years and starred in many productions. Ali was famous for his “one liners” and never lost his mischievous sense of humour. It is therefore fitting to celebrate his amazing 50 years knowing that he would likely smile and say “tell them they are asking for me”!

There are a number of ways to support DS Scotland. Leaving a gift in your will is one way you can help ensure the charity will be there to support people with Ds and their families for many years to come. Call us on 0131 313 4225 to find out more.

Full potentialOPINION


Employment is still an area of concern for people with disabilities but progress is being made

Last year, Government Minister Lord Freud commented that people with disabilities were “not worth the minimum wage”. He quickly apologised but, judging by the response on our Facebook page, supporters of Down’s Syndrome Scotland had a lot to say on the matter. Lord Freud’s comments reflected attitudes that cause thedifficulties people with Down’s syndrome (and other disabilities, of course) have in finding sustainable, salaried work but it looks like progress is being made slowly but surely.

The Scottish government runs a Modern Apprentice scheme which is, in theory, “open to anyone aged 16 or over”. However, only 0.3% of people in these apprenticeships have a disability. This highlights the perception of the capabilities of people with disabilities and their place (or lack thereof) in society.

I’m sure our readers and supporters will know of lots of individuals who have been affected by these attitudes. A lot of people with Down’s syndrome do work, of course, but often in temporary or voluntary positions. Feedback from DS Scotland members seems to show that job descriptions are simply too inflexible to take learning disabilities into account. That’s not to say that some people with Down’s syndrome, not only can work but thrive in the workplace. James Whithers (pictured) works in the Morrisons’ cafe at the Gyle shopping centre in Edinburgh. By taking a course at college, he was able to look at different placements and find something that worked for him, which this clearly does. James loves his job and has made a lot of friends.

Another of our members recently received an award for 10 years of service in his job with a McDonalds restaurant. His manager says:

“Like all staff, he has a unique skill set and we are proud to have him on the team. We make the best use of his skills, as we do with every member of staff.” To me, the solution seems relatively simple in this instance - work to an individual’s strengths, disabled or otherwise. As well as a fair wage, this opportunity secures an individual’s well-being, both practically and psychologically. It seems the Scottish Government are taking notice. John Swinney, now Deputy First Minister, vowed last year “to expand apprenticeship opportunities, establish new regional employment partnerships and support employers to engage with and employ young people”. Let’s hope that this includes all young people.

Photo: Andrew O’Brien

by Callum Mackinnon, DS Scotland Communications Officer

NOTE TO READERS: In our e-bulletins in November and December last year, we asked for evidence of the lack of work opportunities for people with Ds (16+) in Scotland. Unfortunately, we only received feedback from one parent. Due to the lack of evidence, no further work on this issue is possible at present. However, it would still be helpful to gather data on this topic. If it is of interest, please call Rachel on 0131 313 7452 or [email protected].

Full potential FUNDRAISING


Uuganaa Ramsay is a Mongol living in Scotland and married to Richard. Their son Billy was born with Ds and this prompted her to write a book “Mongol” to examine the bigotry, prejudice and stigma she experienced during Billy’s tragically short life. Down’s Syndrome Scotland was able to assist her in the early days of Billy’s life by putting her in touch with a family who had a 5 year old child with Ds. This is where the decision to organise a trek to Mongolia was born as a fundraising initiative and to try to end the hurtful and inappropriate use of the word “Mongol” when applied to someone with Ds (who isn’t from Mongolia!!)

TREK MONGOLIA!

Our trek is going to take place in June 2016 (the exact dates to be confirmed). The outline itinerary is currently a combination of trekking and cultural interest activities and is still subject to change:

Day 1. Depart UK (Edinburgh) Day 2. Arrival in Ulan Bator. Day 3. Drive south to the town of of Mandalgov. We will be spending the night in the town.Day 4. Drive south to Dalandzadgad, the administrative capital of the Gobi Desert. We will spend the night in yurts, similar to the ones in which Uuganaa grew up.Day 5. Trekking phase of our journey with a walk through the stunning Yolyn Am ice gorge. Day 6. Trek through the stunning mountain gorges, before exiting onto the famous Gobi desert plain. We will camp on the edge of the desert plain.Day 7. Today we will enjoy a morning in the vehicles for a short drive to visit a family of nomads who live on the flanks of a nearby mountain range. Day 8. We head north for a trek across the mountains of Gurvan Saikhan, arriving at the ‘flaming cliffs’ of Bayanzag. After dinner, we will have an opportunity to visit a fascinating market established by local nomads.Day 9. Morning will be spent exploring the Bayanzag area before we make our way toward the sand dunes of Molson Els, where we will set up camp for the night. Day 10. Today we will complete a circuit of the beautiful Molson Els sand dunes. After the trek we will head back to Dalandzadgad for a celebration dinner, certificates and drinks.Day 11. Fly to Ulan Bator, where the relaxing can begin in earnest with some well-earned sightseeing and culinary delights for all. Day 12 and 13. Return flights to UK.

Please contact [email protected] for a sponsorship pack if you would like to be involved in this very special trek.

Full potentialAWARENESS MONTH


Awareness Month in 2015 has had a bit of a head start with our Six Percent exhibition appearing at Birnam Arts and Conference Centre just outside Dunkeld. Graham Miller’s photographs were ondisplay for the month of February, drawing in crowds from across Scotland, including the Deputy First Minister, John Swinney.

This is followed by a second exhibition at Eden Court in Inverness which opens on Tuesday 2nd March. Another photography exhibition, this puts an exceptionally talented individual with Down’s syndrome on the other side of the camera. Encouraged by his step father, Oliver Hellowell quickly developed a style of his own, capturing the local countryside and wildlife in stunning fashion. This exhibition closes on 31st March 2015. See page 4 for more information on Oliver’s work.

As ever, we have the support of our loyal members and volunteers getting involved with Lots of Socks, Do a Dish, Race 21 and more. There are so many ways to get involved, not only raising funds but, of course, much needed awareness. There are more details on page 24 but, if you have fundraising ideas of your own, please let us know and we will help promote your efforts as best we can. For more information on fundraising, please email [email protected]. We believe that an extra chromosome gives an individual a little more. During this year’s Awareness Month, we hope the people of Scotland will learn a little more and give a little more.

We thank you in advance for your efforts in helping us realise these goals.

FROM POLICY TO PHOTOGRAPHYHow we hope to make Awareness Month live up to its name in 2015

During Awareness Week, the Down’s Syndrome Scotland team will be set up in the Scottish Parliament in Edinburgh (from Monday 16th to Friday 20th March). This is our chance to raise awareness amongst MSPs of the work we do and what is still required. Our key focus this year is on dementia and communication. It is our intention to influence government policy, creating a fairer and more equal society for people with Down’s syndrome and their families. We are always looking for keen members to join our Policy Panel. Please email [email protected] for further information on policy.

Photo: Guy Hinks

Photo: Fraser Band

Photo: Oliver Hellowell

http://fraserband.photoshelter.com

Full potential GET INVOLVED


EDINBURGH NIGHT RIDE - Down’s Syndrome Scotland has teamed up with Global Adventure Challenges for the Edinburgh Night Ride. This 50 mile charity cycle is an amazing way to see the Scottish capital in the moonlight while fundraising. The route takes in views of historic landmarks - Arthur’s Seat, Edinburgh Castle, the Forth Bridges. For more information, please call Global Adventure Challenges on 01244 676 454.

DO A DISH - This is a great way to promote inclusion and become an active community member, not to mention hone your cooking skills! It’s always a fantastic fundraiser so why not set up shop at your school, work, community centre or church and take your cooking or baking to the people? Everyone loves a coffee morning and a bake sale!

PUT THE “FUN” IN FUNDRAISING IN 2015!As ever, there are plenty of fun, exciting and challenging ways to raise awareness and funds during Awareness Month and beyond in 2015! There’s something for everyone here...

LOTS OF SOCKS - Wear your most brightly coloured, mismatched or funny socks for a day in Awareness Week, ideally on United Nations Down’s Syndrome Day on Saturday 21st March. Get family, friends, colleagues or students involved as well and see who will sponsor you! Sponsors can donate directly to you or donate £1 by texting “SOCK21 £1” to 70070.

RACE 21 - Teams of 3 are linked together with rope for a fun and rewarding 1 mile race! Last year over 160 runners took part so we’re delighted to have a rerun in 2015! A Glasgow race is confirmed for Saturday 21st March. Other dates will be announced for races across Scotland in due course but contact us now if you’re interested.

FOR MORE INFORMATION ON ANY OF THESE FUNDRAISING EVENTS AND MORE, PLEASE EMAIL PIPPA ON [email protected] OR CALL 0131 313 4225

DROP A SIZE FOR DOWN’S SYNDROME - If you are not naturally athletic and err slightly in the other direction, we have launched a sponsored weight loss! This is our healthy eating fundraiser and the challenge is to drop 21lbs in 3 months. 14lbs is usually the difference between one dress size and the next. We do want this to be safe though so please follow a nutritionally structured and balanced plan. We don’t need any figures but we would like “before” and “after” shots to see your progress!

Full potentialGET INVOLVED


IF ALL THIS IS A BIT TAME FOR YOU......lots of our fundraisers are already starting to think about what races they would like to enter. If you are one such fundraiser, we have a wonderful range of choices for you to consider!

EDINBURGH MARATHON FESTIVAL - On the 30th and 31st May, this year’s Edinburgh Marathon Festival is taking place again. Last year we had a really good turn-out of runners and we even spotted several Down’s Syndrome Scotland t-shirts amongst the (literally) thousands of runners. If you are interested in running for Down’s Syndrome Scotland, please go to www.edinburgh-marathon.com and follow the links to register your charity place with DS Scotland.

COLOUR VIBE - If the word “marathon” sends shivers down your spine and you feel the word “run” sums up a more gentle approach, then there is an alternative! Down’s Syndrome Scotland has been selected as one of four (two national and two local) charities to support the Colour Vibe taking place in Dalkeith Country Park, Midlothian on 3rd May. It’s a nice gentle 5K run (or jog or stroll) through four checkpoints (one of which will be decked out for Down’s Syndrome Scotland) where you have lots of brightly coloured powder paint thrown at you! Visit http://uk.thecolourvibe.com/edinburgh.php to register.

SPARTAN SPRINT - This was a fabulous event for Down’s Syndrome Scotland last Summer with a Spartan warrior wandering around and urging on the runners! We had 25 runners (including an entire hockey team!) who set off over the 5K obstacle course. Every runner crossing the line wanted to know where they could sign up for next year! So Spartan UK have set two dates for 2015 (17th and 18th July), the first date being for the Spartan Sprint (5K and 15 obstacles) and the second day for the really serious players for the

Alison first took an interest in Down’s Syndrome Scotland when her cousin, Eilidh, was diagnosed 9 years ago. As a former self-confessed couch potato, marathons have now become something of a hobby for Alison as well as a great fundraising opportunity!

“By fundraising for DS Scotland, it’s not only helping a great charity but it has also helped me get off the couch and change my lifestyle and health. It makes me feel happy that I have given some of my time to help a worthy cause so others can enjoy the benefits.”

Well said Alison. Good luck with your next marathon!

DON’T TAKE OUR WORD FOR IT THOUGH - JUST ASK ALISON!

Spartan Extreme (13K and 20 obstacles). It’s a great day out for the family and there is even a children’s course. How about getting a team of youngsters together for a Down’s Syndrome Scotland junior team?! We also need lots of volunteers to help out, as we get free entries for our runners for every volunteer we provide. Register at http://spartanraceuk.uk

Full potential GALLERY

“Face cream? What face cream?” (Evan Alexander, aged 4 from Ellon, Aberdeenshire).

Marie enjoys her Christmas shopping out at the Thistle Centre in Stirling.

Dillan (aged 3) is looking dapper in his shirt and tie for mum Maya’s graduation.

Tiffany (aged 4) enjoys her holiday at the DS Scotland caravan at Haggerston Castle.

Another happy holiday snap from Haggerston. Make sure you book your trip in good time!

David tries his hand at horse riding with Dad, Chris.

Gillian Macintyre celebrates her 21st birthday in style!

Eve (aged 7) meets Deputy First Minister John Swinney at the Six Percent exhibition in Birnam.

Some of our panto volunteers, Gregor and Grace, pose for the cameras!


We love sharing your favourite pictures in Full Potential. Here are some of the ones that really caught our eye over the last few months. If you have pictures you would like to share with us in Full Potential, please feel free to email us at [email protected] or contact us through our Facebook page.

INFORMATION Full potential

About Down’s Syndrome ScotlandDown’s Syndrome Scotland works to help people with Down’s syndrome reach their full potential by providing information and support to them, their families, carers and professionals.

We work to improve the quality of life for everyone in Scotland with Down’s syndrome and their families.

For more information visit, our website at www.dsscotland.org.uk or call us on 0131 313 4225.

Down’s Syndrome Scotland Office158/160 Balgreen RoadEdinburgh, EH11 3AU

0131 313 [email protected]

Full Potential EditorCallum Mackinnon

PatronsJohn BarrowmanGary Coupland

Down’s Syndrome Scotland is a company limited by guarantee registered in Scotland No. 356717, Charity No. SC011012.

DSA England, Wales & Northern IrelandLangdon Down Centre2A Langdon Park, TeddingtonMiddlesex, TW11 9PS

0845 230 0372

Down Syndrome IrelandCitylink Business ParkOld Naas Road, Dublin 12

T: 01 426 6500

Down’s Heart GroupPO Box 4260, Dunstable, Beds, LU6 2ZT

[email protected]

DisclaimerArticles in this newsletter reflect the opinions of the contributors. These are not necessarily the views of Down’s Syndrome Scotland.

On our cover

How to get involvedThere are many ways to become involved with Down’s Syndrome Scotland. Whatever your circumstances, we welcome all who are interested in networking with others through local branch activities or national events and those interested in volunteering their time whether it’s planning and participating in a fundraiser or becoming a parent contact. For those short on free time, you can keep updated on our events and information through social media sites - Facebook and Twitter.

Volunteer Please contact the national office or visit www.dsscotland.org.uk/volunteer to find out about ongoing and future projects.

FundraiseIf you have an idea for a fundraising event for Down’s Syndrome Scotland, please log onto our website at www.dsscotland.org.uk/fundraise where there is information, forms and posters provided to help you plan, organise and publicise your event.

DonateMore information on donating is available online at www.dsscotland.org.uk/donate and on this issue’s back cover.

ContactTo find out what’s happening in your local area, check out the Branches page of our website - www.dsscotland.org.uk/branches.

ConnectSearch for us on popular social media sites - Facebook and Twitter. Keep notified on our most up-to-date information and events and network with other members, parents and supporters by becoming a fan of Down’s Syndrome Scotland on Facebook. If you would like to keep updated on related information in the third sector, follow us @DSScotland.

Become a fan of Down’s Syndrome Scotland

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Jack, aged 2, has just started his own Facebook page, “My Son Jack”. Make sure you give him a “like”

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Full potential DONATE

Please send form to:Down’s Syndrome Scotland, 158/160 Balgreen Road, Edinburgh, EH11 3AU 0131 313 4225 [email protected] Donations can also be made at dsscotland.org.uk/donate If you would like to become a regular donor and set up a standing order, please contact the office above or email [email protected]

To qualify for Gift Aid, you must pay an amount of Income Tax and/or Capital Gains Tax at least equal to the tax that we reclaim on your donations in the tax year (currently 25p for every £1 you give)

(Please tick the box) Please treat this donation and all future donations to Down’s Syndrome Scotland until I notify you otherwise as Gift Aid

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